Monday, April 11, 2011

This prototype has less hard drive, less dependability, but more soul.

While driving in a crazy traffic jam today, Robert was trying to explain to me (by cell phone- hands free, don't worry) how I can get out of the jam by going an entirely different way. As I was creeping along at a snail's pace, listening to directions of what I'd do two lefts down the way, I hit overload. My hard drive was full. I told him I'd call after those two lefts and go from there. My hard drive gets overloaded fast. It's a feature that effects daily life profoundly. This particular feature appeared in the prototype of "Sarah: post NF".

This prototype is good. It's quite different than "Sarah: pre NF"; improved in some extremely key points. But the flip side of gaining those key points is that other points had to slough away, like dead skin.

One of the features lacking in the "post NF" model is consistency. Some days she has lots of energy, less pain, and is patient and present for everyone all day. Other days are spent in bed with low-grade fevers, and general malaise. Nobody in her life ever knows which one will be present on any given day.

This feature gives way to the logical conclusion that she can't commit to jobs. She actually doesn't work hardly at all, even though she is programmed with two entire careers with lots of experience in both of them. The back-up power source, Bituach Leumi (national health care), takes care of the income that is lacking because of this shortcoming.


There is a writers seminar coming up in a month, and I really want to attend. I want help getting my book going and flowing. I could meet other writers, and learn from discussions and consultations about my specific needs regarding writing my book.

I responded to the flyer today, expressed my interest in registering.
It is a month away... how could I possibly plan to be physically and emotionally present for any specific day? Make no mistake, I fully plan to participate with all my presence of mind and heart. I even am doing the early registration.

What is going through my mind?
What if I need surgery for my neck?
It sounds crazy, but looking at my track record, it's not so crazy.
I still don't know yet what is going on with that, and my experience of undiagnosed pain is that when the diagnosis comes, it's never something light or simple.

But I am going to sign up anyway, because prototype "Sarah: post NF" wants to write a book about the wild trip it's been merging from one model to the other.

This is where praying comes into play.
I am not a mechanical or electronic entity, after all.
I have a soul, and that soul has the audacity to talk directly with Gd.
We'll talk, Gd and I... well, I'll listen more than talk, that's how it usually happens.
He'll let me know how to get the guidance I need to write this book.
He'll let me know the best way to deal with, and heal this new pain.
He'll make me pray lots that it isn't a PVNS tumor, or a part of my spine askew.

It's just that all this conversing and waiting for answers and...the pain... makes it hard to know if I'll be there that day in May.

So, I'll pray.


  1. Great post,Sarah. I love the way you write.

  2. I really feel for you, Sarah, and I completely understand the uncertainty. You can't go through life never committing to anything, but never knowing from one day to the next if you'll be able to do what you plan to do is SO frustrating. (And then there is the part of not wanting to let people down either--I've bailed on two evening commitments in the past 3 days, both after being sure I'd be able to go. Meh.) I admire your grace and your ability to leave it with Gd.

    When are you likely to get more information on the pain and what the best approach for it should be? I really hope that your neck issues resolve and the chronic pain goes away very very soon.

  3. good for you that you will bezrat ha-shm attend the writting seminar! do all you can to stay positive, and g-d should give you the good health to take part in something you very much want to do! cheering for you!